The Pain of Exercise
Chronic fatigue syndrome is not the only disorder featuring post-exertional malaise. Widespread pain may be fibromyalgia’s main symptom but exercise problems, while not as severe as found in ME/CFS, are common.
People with chronic fatigue syndrome and fibromyalgia need to be careful about exercise. This study points a reason why
Most studies suggest that ‘exercise’ is generally helpful for FM but a CFS-like scenario still prevails; vigorous exercise such as running, biking, etc, will throw an FM patient into bed and really vigorous exercise is almost unheard of. Just as in chronic fatigue syndrome, most fibromyalgia exercise prescriptions focus on mild exercises such as walking, aquatic strengthening exercise, qigong, tai chi, etc.
Fibromyalgia is four times as numerous as ME/CFS, is associated more with pain – a much more active field of study than fatigue – and has three FDA approved drugs. Chronic fatigue syndrome is the exertion inhibited disorder par excellence – but FM with its painful muscles has gotten more muscle studies.
Something strange is going on in fibromyalgia to cause the exercise intolerance there and researchers are zeroing in on the same area in both FM and chronic fatigue syndrome – blood flows and the muscles.
The Study
In this study researchers used an hybrid near infrared spectroscopy (NIRS) technique to measure three important features of producing energy; how much blood was flowing to the muscles, how much oxygen was present, and how much oxygen was actually taken up by the muscles.
Large blood flows flood the muscles (or should flood the muscles) during exercise to deliver oxygen for aerobic energy production and wash away toxic byproducts ( such as lactic acid).
Results
This study found FM patients muscles were getting the blood they needed but for some reason they weren’t taking up the oxygen very quickly and it took longer for the oxygen levels of their cells to get back to normal after exercise. At least two things could explain this strange finding.
Mitochondria Problems?
The mitochondria use oxygen to produce energy; since damaged mitochondria don’t use as much oxygen, damage to the mitochondria could explain the low oxygen uptake in FM. Damaged mitochondria also often pump out large numbers of cell damaging free radicals which could interfere with muscle metabolism and cause pain.
Or A Debt Too High?
An ‘oxygen debt’ caused by too much lactate or other substances could be interfering with oxygen uptake by the cells.
During exercise enormous amounts of oxygen are needed to neutralize the lactate and other toxic by products created during exercise. This is called ‘repaying the oxygen debt’; it took much longer for FM patients to repay that debt than expected.
The normal muscle blood flows suggested there was more than enough blood flow to ‘clean up’ the lactate the muscles produced. If the muscles were producing more lactate and other toxic by-products than normal, however, then the oxygen present might be going to clean up that rather than getting used up by the mitochondria.
Reduced Blood and Oxygen Flows a Critical Element in FM and Chronic Fatigue Syndrome?
More FM studies than not have found reduced blood flows to the muscle and several ME/CFS studies have as well. These researchers didn’t find reduced blood flows but they did find reduced oxygen uptake which suggested the cells were in an ischemic state – and that could be the key to the whole shebang.
‘Ischemia’ occurs when blood flows to a tissue are low enough to reduce the levels of oxygen and glucose needed for cellular energy production. The problem is actually not the ischemia per se but what comes after it; in what must be one of nature’s weirdest tricks, re-infusing tissues that have been deprived of oxygen with oxygen again can cause a serious problem called ‘reperfusion injury’.
Reperfusion injury can cause high levels of membrane damaging free radicals
It turns out that the absence of oxygen – which means the switching on of anaerobic metabolism and the production of toxic-by products – creates an environment packed for inflammation.
Oxygen is a mild free radical and throwing it back into an oxygen deprived environment can result in an explosion of stronger free radicals such a nitric oxide, superoxide and finally peroxynitrite (eg. Dr. Pall’s). Bizarrely, as that’s going on white blood cells may also bind to the endothelial cells lining the small blood capillaries, once again blocking the flow of the blood.
Hibernating animals get around reperfusion injury by limiting the activity of their anaerobic energy production pathways. That’s an interesting fact given that studies indicate that people with ME/CFS enter into anaerobic energy production very quickly while exercising. Simply walking can be sufficient to exhaust their capability to generate energy aerobically. Some ME/CFS doctors use exercise tests to determine the heart rates at which people with ME/CFS enter into anaerobic energy production. Could people with ME/CFS/FM be creating ischemic zones by regularly entering into anerobic energy production?
It’s very clear that the reperfusion injury in a significant event like a heart attack – where blood flows have been almost completely cut off – is very damaging but it’s not clear how much of a problem lesser amounts of ischemia are.
The Sympathetic Nervous System and Fibromyalgia… Again
Several researchers believe that ischemia induced pain plays a key role in the reduced activity and ‘deconditioning’ sometimes found in FM. Elvin concluded that muscle ischemia induced pain played a key role in FM patient’s activity limitations. He felt that the reduced muscle blood flows following exercise that he found in FM could be explained by deconditioning, sympathetic nervous system issues and/or ischemia induced pain.
Kulshreshtha proposed that an overactive sympathetic nervous system caused a vasoconstriction (narrowing) of the blood vessels. The narrowed blood vessels produced a low oxygen (hypoxic) state which caused pain. The Light’s proposed that a similar vasoconstriction decreased blood flows to multiple parts of the body causing the buildup of metabolites and inflammatory agents. The Light’s finding of a huge buildup of muscle injury sensing receptors in ME/CFS/FM could conceivably be caused by need to constantly monitor the muscles for signs of reperfusion induced injury.
Another study found that increased vasodilation of the blood (increased parasympathetic nervous system functioning) is associated with decreased pain in FM pointed.
Martinez-Lavin’s finding that intramuscular norepinephrine injections (sympathetic nervous system activator) increased pain in most FM patients but not in healthy controls suggests FM is a ‘sympathetically maintained syndrome’.
Blood Vessel Issues
Reduced capillary density in FM could also limit blood flows. The endothelial walls of the blood vessels appear to be thickened in FM and increased arterial stiffness has been found in ME/CFS. Damaged blood vessel walls often result in more vasoconstriction. Interestingly, stress and chronic pain appear to be sufficient to negatively impact blood vessel walls.
Once this process gets started it tends to feed on itself; hypoxia and pain trigger more sympathetic nervous system activity possibly causing further constriction of the blood vessels and further reductions in blood flow.
Muscle-Brain Connection
Note that this process is could be happening across the body. Shungu found both decreased blood flows and increased lactate levels (300% higher!) in his ME/CFS patients brains. Because lactate levels are a function of anaerobic metabolism the high lactate levels suggest that a hypoxic (low oxygen) state is present.
Natelson found similarly increased lactate levels in FM patients brains. When Savella works it appears to do so, at least in part, by reducing lactate levels. Vermoulen proposed that the increased brain and muscle lactate levels found in some ME/CFS studies probably derive from the same process.
Increased levels of pyruvate and lactate in the interstitial spaces of trapezius muscles pointed to an anaerobic state in fibromyalgia. The same pattern, interestingly enough, was found in the trapezius muscles of people with trapezius myalgia but not in people with whiplash (and sore trapezius muscles) suggesting different metabolic problems exist in different pain conditions. The authors suggested increased pyruvate/lactate may be synonymous with central sensitization syndromes such as FM, CFS, IBS, etc.).
Reduced small blood vessel development (capillarization), degraded type II muscle fibers and evidence of mitochondrial disturbances in Type I muscle fibers suggested significant muscle issues were present in FM. Gerdle proposed that alterations in intramuscular ATP, phosphoreatinine (PCr) and muscle fat content probably were probably caused by activity limitations due to pain and problems with muscle mitochondria.
Note the theme here – researchers proposing that inactivity caused by muscle pain in FM may result in deconditioning which exacerbates the initial problems. Reduced capillary production, increased heart rate low blood volume, poor blood vessel functioning, etc. can all be consequences of, or be worsened by, deconditioning.
Chronic Fatigue Syndrome (ME/CFS)
Significantly lowered blood volume is endemic in ME/CFS and blood volume enhancers such as salt, saline, NUUN and electrolyte enhancing drinks are commonly used. A recent study suggested, fibromyalgia patients take note, low blood volume – a very common problem in ME/CFS – is present in FM as well.
Are low blood flows producing oxygen depleted states in FM and chronic fatigue syndrome?
ME/CFS studies have suggested low blood flows (low oxygen states) are important. Vermeulen et. al concluded that the reduced aerobic metabolism found in ME/CFS was probably due to low blood flows (read reduced oxygen flow) to the mitochondria. Natelson concluded that the 20% reduction in aerobic capacity he found in people with ME/CFS was probably due to low blood flows caused by autonomic nervous system dysfunction.
Some ME/CFS doctors agree. Dr. Bell’s book “Cellular Hypoxia and Neuro-immune Fatigue’ is focused entirely on the idea that hypoxic (low oxygen states) cause ME/CFS/FM. Dr DeMeirleir believes the large blood vessels are overly opened in ME/CFS while the small blood vessels are too tightly constricted to let enough blood to get to the tissues. Dr. Cheney believes low blood flows are hampering gut and other functioning in ME/CFS.
Backwards System
Perhaps the oddest thing about the sympathetic nervous system activation in FM and ME/CFS is that it appears to be activated during rest and sleep and blunted during exercise. Essentially the fight/flight system is turned on during rest and then declines when presented with a challenge. To put this into blood vessel terms; the SNS may be narrowing the blood vessels when you’re at rest but then failing to open them sufficiently when you’re active.
Treatment Connection
Phenylephrine’s ability to stop orthostatic intolerance in its tracks in a small ME/CFS cohort by increasing blood flows to the brain during a tilt test was remarkable. Dr. Julian Stewart suggested that some way has to be found to get more blood to the brain (and presumably the muscles) in these diseases.
The fact that several popular drugs used in ME/CFS/FM effect sympathetic nervous system functioning and the blood vessels suggests they may be alleviating low oxygen states.
Kulshreshtha proposed amytripyline’s efficacy in FM is due, at least in part, to its ability to open blood vessels and increasing blood flows to the muscles. The Lights found that low doses of propranolol, a sympathetic nervous system enhancing drug reduced pain, improved the ability to stand and moderately increased cortisol levels in FM patients. (They believe low dose propanolol reduces SNS activation by turning down overactive sensory receptors in the muscles. Normal dose propanolol, on the other hand, constricts the blood vessels causing more low oxygen states and pain).
Mestinon, a parasympathetic nervous system enhancing drug designed to tamp down sympathetic nervous system activation, has been very helpful for some.
Other drugs that can reduce SNS activity such as tricyclic antidepressants, duloxetine, pregbalin (lyrica), venlafaxine and pindolol have been helpful in FM and other pain disorders.
Blood volume has been described as uniformly low in ME/CFS and may be low in fibromyalgia. Since low blood volume impedes blood flows to the tissues, blood volume enhancers may be able to help.
The Hummingbird and Avacen devices which attempt to increase blood flows to the body and brain might be helpful as well.
Exercise Implications
If low oxygen states are causing body-wide pain in ME/CFS and fibromyalgia then pushing patients with low aerobic capacity could be a recipe for more pain. High amounts of aerobic exercise in FM typically result in more pain while lower levels of exercise can be helpful. Some evidence suggests that short bouts of presumably non-aerobic resistance exercise can reduce pain and increase parasympathetic nervous functioning and heart rate variability.
Exercises that enhance oxygen delivery while putting little stress on the aerobic energy production system such as Tai Chia, yoga and qiGong are often recommended.
Conclusions
A recent FM study indicated problems with oxygen delivery to the tissues may be present. Significant evidence suggests that low oxygen states caused by low blood volume, overly constricted blood vessels and perhaps mitochondrial dysfunction could be causing pain and other problems in FM and ME/CFS.
Very interesting. Surprisingly, I had just been doing research on Ischemia. This explains a lot. Maybe, you can go a little more into detail about lactic acid build up with minimal exercise and post exercise malaise due to this.
Thanks for all the informative post. I’m enjoying them.
Issie
Thanks Issie, that’s something to look into..I do know that Staci Stevens states that’s a problem in a subset of patients.
I am so confused, I have been living with fm,for twelve years now, but have always been in denial.I run marathons every year, and am very physical.Anyway, the last couple of days I can hardly move, and have to keep gasping for breath,like I am asthmatic.I have just come across this site,and it does make sense about the lack of oxygen getting to the muscles.Four years ago I had a DVT,and this is prob, why.I still am going to take it easier now,and continue my sport, but don’t feel that I will be able to run as far as have done in the past!! I am 60 next year, and feel that I am fitter than a lot of healthy young people, so I always stay positive.
son
This makes perfect sense to me and this describes perfectly what/how I feel with my ME/CFS. Are there any natural things/ways to fix this (or that have the same/similar effects as the medications mentioned in this article?) for those of us that are unable to handle the side effects from most drugs? Thanks!!
Good question…I really don’t know. I will be coming out with a blog that focuses on ways to reduce sympathetic nervous system functioning and increase parasympathetic nervous system functioning. Someone recently told me that Staci Stevens told them that very short bursts of aerobic exercise….ie strength training, I guess, is the way to go on the exercise front – and on review stated it did stimulate PNS functioning. Deep breathing can stimulate vagus nerve functioning (parasympathetic nervous system activity) and then there are quite a few drugs.
Note that the propanolol used is at 1/5th to 1/10th the normal dose….Maybe something like that would work for you as well (?)
They are suggesting drugs that appear to cause vasodilation. The section on salt and blood volume is interesting. I have POTS and my dr has me take salt capsules, which does help my pain and fatigue a lot. If your dr oks it, that would be a natural way.
There are foods that can help cause vasodilation (and the opposite is true). Those might also be a place to start. What is interesting to me, is that I get severe migraines when taking vasodilators or eating foods that do so. Im rx the new cgrp drug, aimovig, for migraines, but worried it might cause my other pain to worsen. Cgrp is thought to play a role ib vasodilation.
The link for the study is not working. And thank you for your excellent job!
Here you go – http://www.ncbi.nlm.nih.gov/pubmed/23116302
Thanks!
Hi Cort, are there any other diseases known with similar overactive sympathetic nervous system like ME/CVS?
There’s fibromyalgia, some heart conditions, temporal mandibular disorder, PTSD, depression, smoking, aging, multiple sclerosis……One web site stated low HRV is often associated with immune dysfunction and inflammation associated with aging, diabetes, osteoporosis, arthritis, Alzheimer’s disease and certain types of cancer.
What is low HRV
Heart rate variability.
Thank You
Has anyone checked into the muscles not getting enough water or fluid (dehydration)? I got really sick one summer, and ended up in the emergency room after being in so much pain for around eight weeks, and had lost 17 pounds because I felt like I was dying, but they couldn’t find anything wrong blood wise or by any other tests. They had me on any IV and gave me two liters of fluid, and I felt so much better the next day. It was a total turn around of how I had been feeling. No matter how much water I drink I still feel achy and dehydrated. I also suffer from IBS and constipation daily. Thanks!
Interesting..Many people do benefit from saline IV. It’s pretty clear though that while increasing blood volume helps – its not the answer. If the blood vessels are still constricted it’s still going to be difficult getting normal amounts of blood/oxygen to the tissues. Still saline IV’s can be a real, if temporary aid.
Normal saline is a buffer for acidic environment. I think I will try a Nahco3 or normal saline with sodium bicarbonate (areal buffer) to nutilize the acid. Sometimes when I’m blowing off Co2 I need to try a chewable Na+Bicarbonant chewable antacid and see if that would help. Very odd. I have no backpack except when with 5 minute of activity and it takes me down. If I stay down until it passes, I can get up and go again it has to be ischemia. MRI showed no functional reason for the pain. Who is doing the work. Where are they getting their patients. I’ll go send me !
Hi. I am a nurse and my husband had that same thing happen and what it is called rhabdomyolysis. Here is the definition : noun
rhab·do·my·ol·y·sis | \ ˌrab-dō-mī-ˈä-lə-səs \
Definition of rhabdomyolysis
: the destruction or degeneration of muscle tissue (as from traumatic injury, excessive exertion, or stroke) accompanied by the release of breakdown products into the bloodstream and sometimes leading to acute renal failure. Look into it and I will tell you this if you have it once you have to be very careful you are at risk of having it again. Best of luck to you.
You could’ve possibly had rnhabdomylosis (when your muscles break down too fast and clog your kidneys with toxic enzymes and proteins). I got very sick one summer as well due to dehydration and over-exertion. The only way they can test it is if they tested your urine and the way they treat it is through IV fluids.
I had similar situation a few years ago. I was over drinking water and not enough sodium in my diet. Doctor explained I was killing myself slowly. My blood was think and organs were stressed. So I had to drink Powerades for two weeks to put nutrients and sodium back into my body.
Hi Christina,
You might want to check out the oral rehydration blog for some more healthy alternatives to Gatorade.
Pickle juice Is the best thing I’ve found so far that works
I have ached for many years. Have had heart valve replacement with mechanical one due to having endocartis. They have tried all kinds of meds but none never make me feel good. Most doctors just think i am crazy. I just did a home sleep study and was told i don’t have sleep apena but I have hyproxemia…not getting enough oxygen. I need to see a pulmunologist asap. It scares me…I am thinking this is also why i ache so bad. When you are in pain it tires you out…my brother had half his lung removed and a nephew. I finally have a primary that never gave up on trying to find out what it could be. Now, I think I finally know. I, too have IBS and constipation issues…Going to doctor in the next couple of weeks if not sooner if i can to try to put a end to the mystery of it all. Tired of people think I a constant complainer …especially my husband. i know where you are coming from and understand. will update what I find out….take care all!
So will using an external oxygen supply help? I know I feel better when I am using my oxygen both at night with my cpap and during the day.
I don’t know. I know oxygen does help in some patients. On the other hand, as with IV saline, I imagine there more to it than adding oxygen. If the blood vessels are still constricted or it the muscles are still pumping out byproducts that demand alot of oxygen or if the sensory receptors are still going banana’s then I would think more would be needed. That”s not to say it might not help.
I just found out about a new test available from doctors in Phoenix, AZ that can actually test for FMS. They have connected it to autoimmune issues and have found a way to test for it. I’m sure that the research they are doing will possibly come up with more solutions. The website is: http://www.thefmtest.com
Some of us with HyperPOTS presentations are trying something new and it is helping with our O2 levels and exercise endurance and best of all our POTS symptoms. Too soon to talk about it yet. But, a few of us are finding really good results so far. Stay tuned – there’s help on the horizon. (Let’s hope that it continues to work long term. I’m only on my 2nd day.)
Issie
Good luck Issie! Please let us know how it goes…:)
I’ve been diagnosed with FMS, had it for eight years, diagnosed five years ago, I was a regular gym user prior to this, I have always described my symptoms as feeling like over exercise, lactic acid build up and when explaining how it feels, I’ve said it’s like running for that last bit on the treadmill, when your muscles are screaming for you to stop, you have nothing left to give, your muscles feel weak, lack of oxygen in them then you have immflammation in your muscles, stiffness and lactic acid build up when you’ve overdone it in the gym, it just makes me wonder if doctors are really listening to what people are describing, to me this is just common sense speaking.
I agree Patricia…this really seems to fit me like a glove as well…I do think its going to be complicated when it all comes out; it’s not going to be just lactic acid or low oxygen levels but there’s going to be some bloody complex mixture of things going on. We should be hearing more about this later.
Thank you Cort for describing the true dysfunction I struggled with for many years. I kept reading over and over different theories and found that this represented my illness/disability the best. I would give anything to try some of the medications mentioned, having found Lyrica did not agree with me. I have standing orders for saline infusions in my local emergency room, as my local internist understood. The difference is truly amazing after receiving a liter of saline. I still think that there will soon be a day when the scientists can ‘fine tune’ the autonomic nervous system, possibly by something other than drugs, and that perhaps we can learn to control certain erroneous responses. Imagine the day when we gain full use of our brains’ capacity– and can think better and clearer, move more for benefit, and fully utilize our own amazing bodily functions. I get tired of feeling like there is nothing I can do to feel better, like the illness is in control. I am a fighter, and wish to use my own mind to help not just myself but all of us. Many thanks also to Dr. David Bell who put into words, this picture of cellular level behavior. God bless all who continue to study the hidden nervous system, as I think many have received the wrong treatment without consideration of it. (RIP, Dad)
Very interesting article, thanks.
Just an aside note on your spelling – “effect” has been used where it should have been “affect” in at least two places. (Effect as a verb means to bring about; affect means to have an effect on.)
Thanks Mel. I’ll change it..
Hi Cort-
Great article as I read, I am nodding my head up ad down. This describes me to a tee. I read your reply on supplemental O2 and agree that it may help a bit, but not the whole answer. What do you think of hyperbaric O2 at higher levels?
Just wondering. Thanks so much for your great research!
Julie
I’ve been doing Hyperbarics for a year .My pain brain fog and fatigue are gone. . Regenerative med can rx a soft chamber through oxy health . Cost to purchase or 8900. Game changer !
Hi just stated hypobaric for fybromyalgia how are you doing now
About 5 years ago when I had been unable to exercise for over two years already, I hocked my soul and bought a Noblerex K 1000, which is a big vibrator that you stand on. A lot of body builders use them for warm up and cool down, but for me, it’s the only exercise I can do right now and for some time. Just sayin’. It’s better than nothing. Dr. Mercola has a similar model that he promotes on his website. At least it helps my circulation and lymph flow and is supposed to reduce cortisol and all kinds of good things. I am so plugged into this SNS thing and am very sure that is why my sleep is so lousy. Over the years it has gotten worse and the slightest stressor (sometimes just thinking about something I have to do) will put me in fight or flight. It so sucks!
🙂 Exactly the same here – I just have to think about something that I for example need to do….and then I totally crash. It really sucks!
Thank you so much Cort. This is really good info.
Mitochondrial and endothelial dysfunction, low hemoglobin, etc. would as you mentioned most likely be involved.
One thing in particular caught my attention though.
“Shungu found decreased blood flows and increased lactate levels (300% higher!) in his ME/CFS patients brains. Lactate levels are a function of anerobic metabolism; the high lactate levels suggest that a hypoxic (low oxygen) state is present.”
High lactate levels are also associated with diabetes.
http://www.medwirenews.com/57/90290/Diabetes/High_plasma_lactate_linked_to_increased_risk_for_Type_2_diabetes.html
High “brain” lactate levels are associated with a thiamine deficiency.
http://www.medwirenews.com/57/90290/Diabetes/High_plasma_lactate_linked_to_increased_risk_for_Type_2_diabetes.html
“Brain lactate synthesis in thiamine deficiency: A re-evaluation using 1H-13C nuclear magnetic resonance spectroscopy.”
Diabetes is associated with thiamine deficiency. Researchers have found that thiamine concentration is decreased 76% in diabetic patients. Here is some information from my book on the association between thiamine, diabetes and B12.
“In patients with diabetes, the vitamin B12 connection has been established by
researchers at the prestigious Warwick Medical School, University of
Warwick. The University of Warwick researchers, led by Professor Paul
Thornalley, have shown conclusively that diabetic patients are thiamine (B1)
deficient in blood plasma. In the research paper entitled “High prevalence of low plasma
thiamine concentration in diabetes linked to a marker of vascular disease”
published in Diabetologia, the team found that thiamine concentration in
blood plasma was decreased 76% in type 1 diabetic patients and 75% in type 2
diabetic patients (Thornalley, 2007).
The paper states, “The researchers found that the decreased plasma
thiamine concentration in clinical diabetes was not due to a deficiency of
dietary input of thiamine. Rather it was due to a profound increased rate of
removal of thiamine from the blood into the urine.” No other B vitamin is more dependent on its fellow B vitamins than B1. If you are deficient in B12, you will not be able to absorb B1. It will be excreted in the urine.”
Research shows that ME/CFS and fibro patients have low levels of vitamin B12, so perhaps this is the reason for the high brain lactate levels and another association to the low oxygen levels found in fibro.
Interesting Annesse. I developed type 2 diabetes 3 years after I was diagnosed with ME/CFS. I sometimes wonder which symptom is caused by which illness. If it wasn’t for the severity of the muscle and cognitive fatigue I suffer, plus neurological symptoms I have such as myocolnus, I would suspect my diabetes or that I have had pre-diabetes for years and it was missed when I was diagnosed with ME/CFS. I Have often wondered if all of my symptoms would have been put down to diabetes if the diabetes had been diagnosed first.
This was an excellent by someone who is listening to his patients
.. It describes exactly what is happening to me. I tell my doctors this:
I am a nurse(at least I was) and an Educator(as least I was)I have worked in with
side. I will drink alot of fluid before i stand up which helps. I have episodes that feel like an Insulin reaction. I get nauseated & weak, shaky & sweaty with blurry vision. If I don’t sit down almost immediately I will pass out. I’m even better off if I lay down on my left side. I will drink alot of fluid before i stand up which helps. If I am at home I will eat a small bagel with Strawberry Cream Cheese and the nausea goes away. I tell them furthermore if I have to walk a long distance or up a flight of stairs, I will also have Kuschmal respirations and must sit down fight or flight gets triggered. I can visualize physiologically what is going on.
It feels like I have no oxygen and to much CO2. I have said I need to get a blood gas at that moment because I am sure I am in a compensatory resp. Alkalosis with a metabolic acidosis. I have also complained of severe low back pain with any activity even something as simple as showering and washing my hair at the same time, how I have to run and lay down quickly. I stay laid down untl the Kushmal respirations eases up and the back pain stops. I describe my back pain as being like Angina of my back. (ischemia) It comes on quickly, is very severe and goes away when I lay down and rest. Sometimes I wonder if a little nitro would open up the vessels so the 02 could get into the back tissues . It takes along time to shower and dress since I have to jump out of the shower every 5 minutes to run lie down to relieve the back pain, when it’s gone I get up and go until the severe Back pain returns then down again. I do no take pain medicine for this severe pain. Lying down relieves my pain.
if I have to walk a long distance or up a flight of stairs, I will also hade Kuschmal respirations and must sit down. I am breathing pursed mouth Because I am automatically adding a grunting sound to force more CO2 out.can visualize physiologically what is going on. I tell my doctors this: I have episodes that feel like an Insulin reaction. I get nauseated & weak, shaky & sweaty with blurry vision. If I don’t sit down almost immediately I will pass out. I’m even better off if I lay down on my left side. I will drink alot of fluid before i stand up which helps. If I am at home I will eat a small bagel with Strawberry Cream Cheese and the nausea goes away. I tell them that I feel like some looks while having a reaction and furthermore if I have to walk a long distance or up a flight of stairs, I will also have Kuschmal respirations and must sit down. Because I am a nurse I can interpret what I can visualize physiologically what is going on. It feels like I have no oxygen and to much CO2. I have said I need to get a blood gas at that moment because I am sure I am in a compensatory resp. Alkalosis with a metabolic acidosis. I have also complained of severe low back pain with any activity even something as simple as showering and washing my hair at the same time, how I have to run and lay down quickly. I stay laid down untl the Kushmal respirations eases up
I
Cort, you collect the Best information! So many people and some doc’s… just don’t get all these triggers we get and think it is really in our heads! Which it does affect are coping skills with lack of oxygen. So actually reading your Data and reports IS like a Breath of Fresh Air. You reinforce us. I can feel your passion and energy. Thank you so much… for sharing and educating us on all the new information coming out….
I would to hear about you and story & journey thru all this and what has worked for you and things you have tried thru the years. You sound like you are thriving like Dr.T.
I might have to nick name you inspiration man! Best Wishes Darlin~
This was REALLY helpful, thank you. I had been thinking for ages that what was wrong with me was my heart, because my main symptoms are breathlessness and extreme muscle weakness a few days after over-exertion. But when I was in the ambulance, my O2 sats were just fine, and my heart stuff came back okay. So I had started to think, what if the supply of oxygen is okay, but the cells can’t do anything with it, so the body reacts like it’s not got enough oxygen, even though it has?
This, as far as my non-scientific brain can work out, is what you are arguing for here.
This was really helpful.
to tanya, re oxygen utilization…. did anyone answer your question? thx -wendy
Thanks Cort for your excellent explanations regarding the problems with our muscles and nervous system.
This article explains why I do so well on 20 mg Propananol usually twice daily. I take the first dose around breakfast time to keep things steady for the morning and usually need the same amount before I go out in the afternoon for a short walk with my dog.
If I try and walk in the afternoon without the Propananol then I can get a racing heart, sweating, dizziness and extreme anxiety, its really horrible. But with the 20 mg dose taken at least ¾ before then I feel fine for a 20 minute walk. After that amount of time I need to sit for a while because the energy has run out but with a short sit down I can manage about another 5 minutes or so before I need to go home and rest.
Propananol also helps me to get over severe muscle aches when my nervous system has gone into overdrive which can happen quite easily with me. It happened the other day when the temperature rose from 2 degrees where it had been for months suddenly up to 18 degrees or so.
This caused me to have non stop sweating and in the afternoon I felt terrible. I thought it was a low cortisol symptom (I take a full replacement dose of steroids daily together with natural dessicated thyroid) so I took a bit more h/c but all this did was push my bp up too high making me feel awful. I realised then that it was my nervous system going into overdrive so I took 20 mg betablocker, used my oxygen concentrator for 30 minutes lying down and after another 15 minutes though my legs felt very heavy and sluggish I felt ok to go out for a walk with my dog around the park without any ill effects. In fact I felt a whole lot better than before the “attack” started.
I have never had any side effects from the betablocker probably because I don’t have low bp due to the steroid and thyroid meds. Before I took these I had very low bp due to very poor adrenal function. On some days I also need a tiny bit of Fludrocortisone because my body wastes salt.
I used a betablocker. I felt better but then i get verry dizzy and i must stop. But i felt more ‘relax’. It certenly does someting good. Bit i was wondering if the overdrive is not a compensation? We nee to know this before we use drugs to stop this reaction. I think.
I agree Gijs; it’s a complicated situation particularly if the SNS is on overdrive when we’re resting and then starts to poop out when we get active. If you’re turning off the SNS even when you’re active I would think you might have problems. This is why Lights idea of low dose propanolol turning down sensory receptors which turns down the SNS is so intriguing.
Of course, there will be variations on the theme within ME/CFS as well. I’ve been told we should have more answers about what’s going on in some papers that are coming out pretty soon.
By the way I know someone who’s on alpha and beta blockers!
And how is that person responding? Alpha is importent for the regulation of bloodvessels. I believe.
Brilliant article! I have oxygen at home, and going on it relieves pain! I’ve been telling my Dr this for years, but he still doesn’t think my pain and poor oxygen uptake are linked.
Can I ask how you got the O2 covered by insurance? I would live to try this!!!
Norepinephrine transporter A457P knock-in mice display key features of human postural orthostatic tachycardia syndrome. Shirey-Rice JK, Klar R, Fentress HM, Redmon SN, Sabb TR, Krueger JJ, Wallace NM, Appalsamy M, Finney C, Lonce S, Diedrich A, Hahn MK. Source Vanderbilt University School of Medicine, Nashville, TN, USA.
I used to drive to the doctors office real quick to document what was happening to me(before diagnosis). I was diagnosed with asthma, got puffers, IV NS and o2. This went on for 3 years. I had 6 car accidents, all my fault, all in route to the doctor Urgent Care Center. No accidents prior to this. It seems non-sensical to warn people to not drive your car when you are in one of these episodes but I was despairate for help and I live alone. Crazy ! I don’t do that any more and I rarely occurs now. Eight month into treatment with a 1000 mg Valtrex 3x/day, my respiratory symptoms(infections) went away. I traded that car off and got a different and I don’t drive it at all dying those dizzy or balance spells with blurry vision. Gotta be 02 deficit. Great validating discussion.
I am writing on my IPhone and it spells out words for you and if you don’t proof before sending., you get all these inappropriate words. They’re spelled correctly,, just the wrong word. Sorry
The Pain of Exercise
Thanks for another great article Cort. You are firing on all cylinders with your writing. I am so glad you recognize and understand the importance of The Pain & Exercise. I have become very de-conditioned because of it, which just makes it worse. Great contribution Cort!
This makes me wonder…I quit smoking regular cigarettes 14 months ago, switched tot he electronic cigs – which would give me more oxygen w/o the smoke – would the nicotine in the E-Cigs make a difference in oxygen?
Makes since. since I have needed oxygen for many years now. It’s definitely part of it.
Ok, I am confused. The doc (who, I don’t think even believes in CFS) tells me my blood is too thick. (I live at 8000ft. currently, which is something else to correct, but is evidently why I’m producing too much RBC.) In other words, both my hemotocrit and hemoglobin are too high. But how does this fit with “low blood volume”? Is it possible to have lbv and just have too many red blood cells in the blood you have? Any help with this? Seems a saline drip would help both but not sure. The doc wants to just take blood out of me, but if my blood volume is low seems that wouldn’t help. I’m having to sort of do this stuff myself and try to get her to go along with me. It hasn’t been easy.
Mild hbot–very safe but pushes enough oxygen into tissues (partial pressure at sea level is .21 and at .13 ata with a leaky mask giving essentially 50% oxygen from a concentrator is .63–three times as much and pushed into the plasma).
Just the pressure along shifts one to parasympathetic.
So its doubly useful, and very safe.
It’s underutilized, don’t know why.
Oxyhealth makes the only FDA approved chambers for practitioner and home use. There are others around but there have sometimes been accidents associated with them. Oxyhealth can usually find out if there is a practitioner who has one in your area.
Whoops–there seems to be no edit function on here?
1.3 ata. not .13. It’s 4 psi. Very mild pressure the equivalent of 10-12 feet down in a swimming pool.
The equivalent amount of oxygen would be pushed into plasma and tissue at 66 feet in a scuba dive on air in the tank.
I have done mild hyperbaric oxygen chamber treatments and felt almost like my old self again for about 6 months, which would make sense because when I was done and no longer getting the oxygen, my body reverted back to where it was originally.
So interesting Gig! Thanks for sharing that.
Aloha!
Thanks so much for this article. It explains very well why I have such luck helping people eliminate pain even when there is no evidence of low oxygen saturation. I’m the Life Breath Coach and I help to coach people out of health crisis, but I’m finding that what I do eliminates pain in a huge way!
This article might be a little challenging for a lay person but it sure spells out why the “Bless Your Heart” model works to get people out of the hospital and back to work!
Reading this is salve to my spirit!
Thanks!
Carrie
Glad to hear it. Staci Stevens at the Workwell Foundation uses diaphragmatic breathing to help people reduce pain in ME/CFS.
Have been a fibromyalgia sufferer since teen years,but was labeled 1989. Your ideas on the body’s use of oxygen have intrigued me. I have been excited before, but ultimately disappointed. My next move will be to ask my doctor to research with me and attempt some of the things you suggest. If you have data or references that might be helpful please send me the links at my e mail
I’m starting to notice before I go to bed, if I eat several prezzels with salt I have a deeper sleep. I wonder if it is also effecting my pain being less. Found the sites not sure what they mean.
Salt & Pain:
http://www.hindawi.com/journals/prt/2012/981565/
Salt & Sleep:
http://sleeptips4u.blogspot.com/2008/08/salt-and-sleep.html
Gosh, this makes so much sense to me and also explains my heart feeling like it has stopped and then restarts and beats like crazy leaving me breathless. I do have mitral valve prolapse but never had any problems until after my diagonsis of Fibro. What can be done to infuse oxygen into these areas? Is that being researched? Thank you.
Mild hyperbaric oxygen chamber helps. It’s expensive, but it helps and just recently someone told me about the Bemer. I watched a video on it last night and it showed how it pumps oxygen into the small blood vessels.
Re: the blood flow/blood vessel issues that a couple of researchers have been looking at.
This reminds me very much of the research that the Australian doctor, Les Simpson was running in the late 1980s/1990s. He was looking at the red blood cells themselves, and found that high levels of lactate in the blood tend to push erythrocytes into temporarily deforming and becoming more rigid. Moreover, he found that ME/CFS/CFIDS patients had higher levels (than healthy people) of erythrocytes that had become rigid and stuck in odd shapes, and that that level increased even further during/after even minor exercise. Since erythrocytes are meant to be floppy so that they can squeeze down the smallest of capillaries, this is a big problem.
Either way, whether we’re talking about capillaries that are too small for blood cells, or blood cells that can’t fit down the capillaries – or both – we still end up with a subset of symptoms that are rather reminiscent in their effect on the patient, of sickle cell anemia.
I have aoways had a slow metabolism. ..poor circulaion and low blood pressure. ..I have had Mono more than once..I’ve had many times in my life where over exertion led to inabilty to walk do to extreme muscle pain…I have very small veins and am not an easy stick…veins roll…I couldn’t even donate blood for my own surgery’s…I think this makes perfect sense. Thank you!
Hi Maggie
I heard from people that before going to do the blood test drink pleinty of water or fluids
because it will open up the small veins so that you will be able to do the blood
test,and for the low blood pressure try to take salt in foods maybe you are deficiency just to make sure you are just take a simple blood test from a doctor ask it.
And for the poor circulation problem it might be the varicose veins on your legs,
I sujest do your own research on google like I do for my self I don’t rely only on
doctors but also on google search for my self so that I could also help people.
And for slow metabolism we have different metabolism, try enzyme products
at the pharmacy named le naturiste,plus exercise will increases metabolism
system into your body, try also Metamucil which is fiber while you are eating so
that will help digestion also enzyme will help digestion I believe it’s related to help you for your slow metabolism because slow metabolism will cause overweight and overweight causes cholesterol and diabetes. Exercices will help you boost your poor metabolism, do cardio on trill or walk or running if you can, exercices will also increases the enzymes in the body that burn fat, improves metabolism, and circulation problems, and also blood pressure but drink pleinty of water for not to depleted into your body, every thing in moderation I subjest you. Hoped that helps you. Take care yourself. Sara
I have been on oxygen for 1 year & 3 months as a result of a sleep study. My last overnight oximetry test in August 2013 indicates I do not need the oxygen; however, I swear it helps me with fibromyalgia and CFS. I can’t keep it if insurance doesn’t pay. Any idea how I can get the O2 covered for fibromyalgia/CFS? I have multiple other diagnosis as those of us with these conditions usually do. I am DESPERATE to keep O2, so ANY advice is very, very much appreciated.
Thank you in advance for your much appreciated time.
Mindy
Excellent article Cort! Been discussing this exact theory with some very smart minds recently. I find it 100% true as well.
I have felt ‘starved and suffocating’ at the cellular level for quite a while now – especially since my big crash a couple years ago.
It seems this theory is very accurate. What is needed is to dilate the tiny blood vessels to let in the blood & oxygen to the tissues – deliver nutrients and excrete toxins. Know what does this? Sam-e! Even years ago when I didn’t know the specifics of this mechanism, I used to explain to people that Sam-e “Opened up thousands of tiny floodgates” throughout the whole body. 1-2hrs after a tiny dose of Sam-e I could feel all this “flow” happening at the very base cellular level in the body! All of a sudden my tissues didnt feel starved of oxygen and everything flowed well and I could function much better.
However! As stated in your article, this later caused a long period of pain flare up (inflammation) systemically. It’s like the body is shutting off the tiny blood vessels to reduce the inflammation it causes. However I find I *have to* keep taking even very tiny doses of Sam-e to keep going at all (im more severe than most though). Without it all flow just totally shuts off to my tissues.
Taking oxygen by mask/tank etc does not help this problem at all. It *must* be a substance that dilates the tiny blood vessels. Extra oxygen via the lungs doesnt help this at all.
Interestingly, things that clear/purge the liver (in my case the liver is the most severe problem in the body) increases blood and oxygen flow to other tissues. But it always comes with a cost of systemic pain/dysfunction while that’s happening.
Thanks Chris!
Very interesting about Sam-e. I don’t know anything about it. It sounds like something I should try. I’ll definitely look into it. Thanks for the input 🙂
Thank you for summarizing the latest research and what I have seen in my clinical practice since I started treated ME/FM patients after I have been personally through that downhill roller coaster ride. Research is starting to build a model for the cellular dysfunction and finally doctors are starting not to push exercise as if those patients would benefit from exercise as depressed and anxious patients do.
Regards,
L Montpetit, OT (C)
My wife has been suffering with FM/CFS for over 20 years and recently her fatigue has gotten worse. I read with interest your references on the impact of oxygen utilization and would like to explore this area I greater detail. Is there a practitioner I the San Francisco area that specializes in this aspect of CFS that you can recommend? Thanks, John
For more than 15 years, I’ve had little progress with CFS. I’ll spare you the details, other than the fatigue that came with the most god-awful sickness, constant, 24/7, for years.
Than, a little over a year ago, I was able to convince the Doctor that the med for depression was killing me, and maybe I should to be on ADD meds.
She didn’t like the sound of that at all. Better to die while on Zoloft, than on Ritalin. But she gave in, and I’m still here, and better now.
Right away, I could work again for a few hours at moderate exertion. Now, as long as I don’t get carried away, I can handle about half of what someone my age can do in a day (60yr).
I’m not able to keep that up all the time, because it’s an inconsistent state of affairs for me. Overdoing any labor will cause the sickness to come back. It may take days to recover.
The above is just enough info for you to compare yourself to me, and may at least find a little help from the things below that has made my life much better, even if I’m not completely well.
(Water): I find that if I drink about 70 ounces of water each day, it keeps my system working fairly well. This is turn causes me to sleep better. Better sleep = more energy.
Drink most of your water thru the day, slow down at night or you lose sleep jumping up and down going every 30 min.
I also try to get enough salt (sea salt), because too much water may deplete your system of salt and other minerals.
The source is from a book: “Obesity Cancer & Depression: Their Common Cause & Natural Cure by F. Batmanghelidj
(Gator Aid): The Ritalin causes me a lot of joint and back pain.
I suspect many meds do this to people, and we may never think to question the possibility of chemicals being deposited in our joints, because maybe the liver is over worked, and doesn’t have enough free water in the system to move the toxins out.
The water alone does help, but is not enough in my case. Kudos for Gatoraid. I walk around without the pain now. I mix one near full scoop of GA power in 10 ounces of water each day, maybe 4 days a week.
(Deep Breath): The CFS also brought with it a drastic reduction in mental ability. Brain fog and the loss of memory are just some of the problems people with CFS have. Most of you likely deal with at least some of this.
The only thing so far that has made much of a dent in cognitive failure is doing breathing exercises.
The one I use most is; taking a deep breath thru the nose, than slowly release it thru the mouth with pursed lips, or use a straw to blow thru (+/- 3 sec. in, and 10 sec. out).
You may want to do this once every minute or two, several times. Do this as many times thru out the day as you feel foggy.
It will seem that it’s not working while you are doing the exercise. It takes me about 10 minutes before I notice that it has begun to wake my dead head.
I do this in the morning when a pound of Starbucks coffee, nor God him self can bring me on-line.
The source for breathing: http://www.breathing.com
(Protein Power): Sometimes when I’m going to be working, I’ll mix a glass of Whey powder into Almond or Coconut milk.
This will help, and I’ve even worked full days without a crash, or having to pay the piper the next day.
Even with all this, sometimes everything just stops working, and for days I don’t function. Who knows why?
Some day folks like us may experience “normal” again?
Better health to ya’ll
Thanks for all the tips! I’ve always wondered about Ritalin because my guess is that cognitive issues are really important not just for brain-fog but possibly physically as well.
I have forgotten about that breathing technique- thanks for reminding me 🙂
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I read your article and I’m very interested in this subject I have had RSD or CRPS for about 12 years and it just seems to be getting worse I do physical therapy in the water and that has been the only thing that has given me any relief however I am very sore and fatigued for a day or two after but I love the feeling of the exercise in the water and it is also water that is quite warm. You are writing about fibromyalgia and chronic fatigue syndrome is there any possibility that this could be related to the RSD or CRPS just a thought I know people with FM but I don’t know anyone else with RSD I have taken a lot of the FM medications and they do seem to help but my RSD is the type that is body-wide and tend to go anywhere I get bumped or fall or hid if you could give me a little insight Maybe on how this might affect RSD that would be wonderful thank you very much
I wouldn’t be surprised at all if there is a connection. Both seem to be immune mediated with an autonomic nervous system overlay. For me I will keep an eye on CRPS and please keep an eye on FM and ME/CFS findings. Good luck!
Twenty one years I’ve been presenting with these symptoms to my doctor and only recently been diagnosed with FM. This article has explained more than the literature they’ve given me. Thank you. Thanks to everybody that commented too. You have given me a head start on proper treatment. Antacid seems so simple but makes more sense than being zoned out on Gabapentin etc.
Someone please help me if you can.This is going on with me and I have severe nerve pain at night so I’m awake all night and I’m getting run down and sick with everything as my immune system is crashing.Im sob,palpitations,my nerves are flaring in my whole body.I feel like my body is screaming all night long and it won’t shut up.Im freaking out and the doctors won’t listenand my pain at night is 10+ my whole body hurts.Please anyone one here have this.Anycures or anything to help it.
Whoa!
Have you tried low dose naltrexone or medical marijuana? If you haven’t look up the low dose naltrexone resource center on this website. I’ve found that high THC cannabis works wonders for pain and sleep at night.
I read an autopsy from someone who had fibromyalgia. Her muscles and organs showed signs of low oxygen. Also i believe you are seriously on the right track. It would explain a lot. Any suggestion for combating this problem? Ive been fighting the brain issues with a theary of acetycholine defiency. I believe there are sinificant changes in level of gaba in the brain as well. Ive been using supps to increase my choline and have had huge success with lowering my pain levels. But something else other than just pain is happening. Im not as strong nor do I have any stamina which I believe you are explaining in this article. Thx for any help on figuring out fibro. It is not enough to survive. I wamt to live again like I used to. Thx again.
Very interesting! Thanks for passing that on Tami. The autopsy is not publicly available is it?
Just come across this thread… I’ve been saying to my doc for years now that its like my muscles have no oxygen or something, and that acid is staying in there. I’m not medical, but and Engineer, and although my oxygen levels are always 98% on the oxi-tip, I’ve been convinced its the interface from the blood to the muscle itself… sounds like this is what you’re saying here!… so any progress on improving this interface?.. is SAM-e worth a try?… many thanks !!
I was wondering if there is any link to having chronic fatigue and port wine stain birth marks on 40 percent of the body, because port wine stains can cause a problem with the blood flow in a persons limbs to the point that a limb can be emaciated and have less muddle mass and even a foot that is a inch or so smaller, just because of blood flow. Port wine stain birthmarks can mean damaged capillaries and blood vessels. I know this because I was born with varicose veins from birth, so I would like to know or see more on this. If there is a link between chronological fatigue and poor blood vessel and capillaries due to having port wine stain birth marks.